PEP Forum

Jan 4, 2009

Hello Dr. Frascino,
I read your PEP question forum and you seemed surprised by many of the folks who have written you.
Let me share something with you.
PEP is not a universal term.
I felt as if I was apart of high risk exposure, so I contacted my personal doctor's office. Answering machines. I called the GMHC. Closed til Monday, it was Friday. I contacted the CDC. They said go to the emergency room. I chose to go to a Beth Israel Chelsea Clinic. For a Friday night, they had one doctor on duty. The waiting was 5 to 7 hours. None of the staff on hand heard of PEP. I described it to them... I learned about it from, of all people, Charlie Rose... from watching his show with David Ho and Anthony Fauci.
During this time I kept in contact with a disease specialist doctor friend I know in San Fran. He recommended Trivizir for one month. The doctor I saw in NYC hadn't heard of it. She faxed my situation to an emergency room. They faxed back "drug options". The doctor showed them to me asking my preference!
I told her to write me out a prescription and call me in the morning (it was 4am). I asked her to consult the morning shift doctor on what I should do... remember, it's a 72 hour window period (in theory).
The next morning, it was realized I should have blood work done. She also changed my prescription to Combivir and Atripla... the doctor friend in San Fran felt that was overkill.
Nonetheless, I go to the pharmacist. Apparently, the doctor didn't indicate properly if it was 30 pills or 30 days of medicine, or both. So, I had to go back to the doctors office.
The doctor had left and now wasn't reachable... remember, 72 hour window period.
A new doctor, to help expedite things rewrote the prescriptions.
Neither doctor discussed side effects. Neither discussed follow up.
I go to the pharmacy and my coverage just covers $400... so I pay out of pocket $1800 for preventative "theory".

Now, you get random emails from folks confused by so many things... and to me, it comes from the top down.

PEP is not universal.
PEP is theory.
PEP is what I had to tell my doctor.
PEP is what I'm currently on now.

I am also currently, unemployed just as of this month.

Now, I am someone who decided to follow through because I watched Charlie Rose interview David Ho and Anthony Fauci experts on Aids and Prevention. If it wasn't for his show, I might not have known there was preventative options due to exposure. I am not certain if I was exposed to hiv or not, just semen.

I wonder about all those who were deterred the minute they realized GMHC was closed, the emergency room was packed or too expensive, a popular Chelsea clinic was short staffed and had people waiting up to 7 hours, or by a doctor who had no idea what PEP was and asked the patient what to do.

The emails you are getting are by those trying to be proactive.

I am trying to be proactive... I am, like many who have written you, trying to be preventative, but so many questions remain because it feels like we're grasping at straws have the time... we are mislead, or rerouted, for a slew of various reasons.

So, what do you think my next step should be?

Personally, I would like to find a doctors' office which is more knowledgeable and welcomes those seeking care, even if it breaks the bank of those seeking care.

One doesn't like to feel as if they are playing guinea pig to uncertain medical studies.

But alas, maybe that's all I am and all I can ask for.

I'd like to know if I should be restricted from not working out, running, or doing manual work. I'd like to know if I should check back with my doctor's office. I'd like to know, if on PEP, I'm more susceptible to catching the flu, a cold, or anything since the drugs may compromise my immune system...

So many questions, unanswered.

Who's accountable?

Undeterred, I've turned to of all things... the internet.

Sincerely,

D in New York

Response from Dr. Frascino

Hello D in New York

While I am horrified (but not completely surprised) by your experience attempting to access nPEP (non-occupational post-exposure prophylaxis), I can't help but wonder why you are taking your frustrations out on me. First of all I do not have a "PEP question forum." However, I am the expert in the Safer Sex and HIV Prevention forum. In that capacity I have addressed the topic of PEP and nPEP many times. On every one of those occasions I have attempted to provide compassionate and science-based factual responses, often providing the link where the questioner could download the full 27-page report: "Antiretroviral Post-exposure Prophylaxis After Sexual, Injection-Drug Use or Other Nonoccupational Exposures to HIV in the United States." (www.cdc.gov/mmwr/PDF/rr/rr5402.pdf) These are the formal guidelines and recommendations from the U.S. Department of Health and Human Services.

Unfortunately I have no control over when your personal physician closes his office or turns on his answering machines! (Most primary care offices will have another physician covering the practice when the private office is closed.) The advice you received from the CDC was correct. If you cannot reach your personal physician or your personal physician is not well versed in PEP (shame on him!), you should go to an emergency room or urgent care clinic. As for staffing at your local facilities, again, I have absolutely no control over that problem! However, it does point out just how broken the health care system is here in the U.S.! I don't know who you spoke to at the Chelsea Clinic, but I just decked with the physicians there and they are well equipped to evaluate both occupational and nonoccupational HIV exposures and to prescribe PEP if warranted.

As for the PEP recommendations you received, there is no such thing as "Trivizir." I can only assume your friend meant Trizivir, a combination of AZT, 3TC and abacavir. This combination is not a first-line recommendation for PEP or nPEP. I would also agree that Atripla plus Combivir was indeed "overkill!" Atripla contains efavirenz, tenofovir and emtricitabine. Combivir contains zidovudine (AZT) plus lamivudine (3TC). The combination of these products would total individual five drugs when usually only three (sometimes two) are generally recommended foe PEP or nPEP.

That your doctor didn't know how to properly write a prescription is again something beyond my control. That none of these buffoons bothered to discuss side effects or follow-up is shocking.

I should also mention I'm concerned by your statement that "I am not certain if I was exposed to hiv or not, just semen." PEP is generally recommended only for significant HIV exposures. An HIV specialist would be able to advise you if a course of PEP is warranted or not.

So what do I think your next step should be? As I have repeatedly suggested in this forum, I recommend anyone who has an HIV exposure significant enough to warrant a course of PEP be followed by an HIV physician specialist. (See below.)

To briefly respond to your many questions:

1. There are no restrictions on physical activity, working out, running or manual labor while taking PEP.

2. Routine follow-up is recommended while on PEP. The HIV physician specialist will usually want to see you back one week after beginning PEP, sooner if you have difficulty tolerating the medications.

3. PEP does not compromise your immune system. You would not be more susceptible to colds or flu while on PEP.

4. Who's accountable? Well that depends on what you're asking. You are most likely accountable for your exposure. As for your bad medical care, there is plenty of blame to go around. One thing I'd like to point out: I'm not accountable, OK? I'd suggest you read through the PEP-related questions in the archives of this forum. I believe you'll find the information there consistent, enlightening and hopefully even encouraging.

I just finnished PEP (zodivudine, lamivudine, crixivan) a week ago. After taking PEP I had a couple side effects, tingling in the fingers, a tiny bit in the neck and toes an exhaustion. After a while I stated to have a lot of pain in my neck, especially when I turned it to the left. The neck pain started to get better, especailly after the PEP finnished. However, the pain hasn't fully gone away and think I may have felt two swollen lypmh nodes on the back left of my neck. Is this a sign of ARS and PEP failure. I checked my groin and armpits and didn't notice any other lymph nodes swelling. My back is also a bit tense and stiff right now. I asked this quesiton the other day and didn't get s response. I know you are quite busy, but I am very nervous and stressed out right now.

Response from Dr. Frascino

Hello,

As I have frequently stated in this forum, I recommend anyone who has had an HIV exposure significant enough to warrant a course of PEP (post-exposure prophylaxis) be followed by an HIV specialist. (See below.) It seems the vast majority of folks who take PEP have many concerns about "symptoms" that arise during or after PEP. The HIV specialist would be able to evaluate such symptoms and relieve those fears more effectively and efficiently than I because I do not have access to your medical history and file, all your laboratory tests and I cannot conduct a physical examination. That said, from what you've told me, I do not believe your symptoms are HIV related.

Dr. Bob

pep and the worst year of my life. (PEP AND THE NEED FOR HIV SPECIALIST) Jul 13, 2008

I'm a bit nervous because I just took PEP and I don't know what the side effects are so maybe you can help out with it.

I've been having pains in my right abdomen for about a month now but my liver enzymes are normal. I'm still a bit scared because it is where my liver is.

Yesterday, I has receptive anal sex with a stranger. I put a condom on him and he was doing what he was doing. Then he said, I THINK SOME ONES COMING, So I look around, there was nobody there and looked behind me. Saw that the condom with lube was on the floor and his zipper was zipped up. Didn't think anything of it. Went home and pooped. I saw a glob of his semen in the toilet and was going to kill myself.

My possible exposure before this one was 4 months ago. It was anal receptive without condom with a guy I barely knew who I can't get in touch with. I came down with flu symptoms and was told to test at 3 months and then 6 months and then a year because I got really sick.

So my result was negative today before I started pep. I wanted to know if my testing window period will change for the sexual encounter that took place 4 months ago or should I trust in a 4 month negative??????

PEP treatment is 1 month.

When should I test again.

Should I stop taking the pep?

Does pep have hiv in it that will effect me if I have previously been exposed(4 months ago), ruining my chances of being negative?

I've had the worst luck any guy can have. I didn't have sex for 4 months and the one day I decided to cruise, I got violated.

Will pep have a bad effect on me if I am infected and don't know it from the 4 month issue?

I know that you're the only one that can answer these questions for me.

Response from Dr. Frascino

Hello,

Why would you think I am the only one who could answer your questions! Your questions are not uncommon or particularly challenging. Any HIV specialist should be able to help. I'm a bit concerned by your first statement, ". . . I just took PEP and I don't know what the side effects are . . . ." The prescribing physician (hopefully an HIV specialist) should have explained potential side effects at the time the medications were recommended. I can't specifically answer this question, because side effects are different from person to person and also the range of potential side effects differs depending on which antiretroviral medications are in the PEP regimen. I'm also concerned about several of your other questions, such as "Does PED have HIV in it?" Questions like this demonstrate a profound lack of understanding of post-exposure prophylaxis and antiretroviral therapy. (The brief response is no, of course these medications do not contain HIV!)

Your multiple concerns clearly demonstrate why I strongly recommend that all folks who have had an HIV exposure significant enough to warrant PEP have an HIV specialist involved in their care. The HIV specialist will:

1. Evaluate and document the HIV risk exposure.

2. Recommend PEP if warranted.

3. If PEP has already been started, the HIV specialist will revise, optimize or suggest discontinuation of the PEP regimen as indicated.

My advice to you is to contact an HIV specialist. He or she will specifically address all your concerns in detail. I would also suggest that you be a bit more discerning regarding your sexual partners. When that last jerk said "I THINK SOME ONES COMING," apparently he was talking about himself! If he managed to ditch the condom without your realizing it, you really need to pay more attention to "what he is doing while he's doing what he's doing," particularly when he's "doing" you!

Good luck!

Dr. Bob

ARS or PEP side-effect? Jul 3, 2008

Hi Doc,

Thank God for you and this website! Quite concerned over the following:

I'm on PEP (Kaletra and Truvada) after a potential exposure (4 days ago) and noticed yesterday for a time (and again today) that my face is quite warm and I feel flushed. I have had the usual loose stool, stomach-related side-effects of the meds but I'm REALLY hoping that you can tell me if a slight temperature might also be a side effect and not a result of the "ARS" I see so many here concerned about. Obviously self-diagnosis is a BIG mistake, as is worrying and stressing but I'd very much appreciate your honest opinion.

Many thanks

Response from Dr. Frascino

Hi,

Your question graphically demonstrates the reason I suggest anyone who has had an HIV exposure significant enough to warrant a course of PEP be followed by an HIV specialist. The HIV specialist can document your true degree of HIV risk, optimize PEP regimens, evaluate and manage all PEP-related side effects or toxicities, monitor for and evaluate any possible ARS symptoms and arrange for an interpret all post-PEP HIV tests. Having to take a course of PEP is indeed stressful. Having an HIV specialist involved can significantly reduce that stress. I cannot evaluate symptoms or make diagnoses over the Internet. What I can tell you is that "feeling flushed" and actually having a significant fever are two very different things. Also, even if you were to have an elevated temperature, there are many conditions other than HIV that could be the cause. I can also advise you that symptoms four days after exposure would not be related to HIV. It takes weeks, not days, for the symptoms of acute retroviral syndrome (ARS) to appear.

Dr. Bob

condom broke during the act Jan 20, 2007

First, Thank you so much for this forum.

about 4 days ago i had vaginal sex with a woman who i later discovered to be very high risk. the condom broke during our act and it was less than 3 or four minutes later that i finished. i don't know if she was hiv positive and have no way of finding out. the following day I went to the emergency room and was perscribed ATRIPLA. and of course i am not feeling very well at all on it. I go to the bathroom often and have the symptoms of a low fever at times during the day. cottonmouth, sore throat ...

I live in san francisco, and am wondering if I should have a follow up visit with a specialist in the area. And How I would find such a doctor.

Also was my risk and exposure high enough to warrant such a drastic step as ATRIPLA?

And of course I am completely freaking out that one stupid drunk moment has damaged my body to such a degree, has anyone built a time machine yet?

Response from Dr. Frascino

Hi,

Personally, I feel anyone who has had an HIV exposure significant enough to warrant a course of PEP should be followed by an HIV specialist, if possible. The HIV specialist would:

1. Evaluate the risk to see if PEP was really warranted.

2. Optimize the PEP regimen.

3. Evaluate and manage PEP-related side effects and toxicities.

4. Arrange for and evaluate post-PEP HIV testing.

Living in San Francisco, you have many options from which to choose regarding HIV specialist. Certified HIV/AIDS specialist physicians in your area can be located by consulting the American Academy of HIV Medicine Web site, www.aahivm.org.

Finally, if you do find that time machine, let me know. I know millions of folks who want to go back to 2000 and 2004 and recast their presidential vote.

This forum is designed for educational purposes only, and experts are not rendering medical, mental health, legal or other professional advice or services. If you have or suspect you may have a medical, mental health, legal or other problem that requires advice, consult your own caregiver, attorney or other qualified professional.

Experts appearing on this page are independent and are solely responsible for editing and fact-checking their material. Neither TheBody.com nor any advertiser is the publisher or speaker of posted visitors' questions or the experts' material.

The Body is a service of Remedy Health Media, LLC, 750 3rd Avenue, 6th Floor, New York, NY 10017. The Body and its logos are trademarks of Remedy Health Media, LLC, and its subsidiaries, which owns the copyright of The Body's homepage, topic pages, page designs and HTML code. General Disclaimer: The Body is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through The Body should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.